DrSclafani answers some questions

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby Cece » Sun Jun 20, 2010 10:24 pm

Dr. Sclafani, we are rooting for you. Big time.

I have a good feeling about tomorrow.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Re: Dr. Sclafani -Wishing you the best on Monday

Postby pegmegrund » Sun Jun 20, 2010 11:08 pm

drsclafani wrote:I needed a bit of a break, so sorry for not being very available this week.

I thought maybe you had snuck out for another trip to Italy! :) Good luck with the IRB.
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Thinking of you

Postby QueenMum » Sun Jun 20, 2010 11:45 pm

Dr. S.,

Happy Father's Day to one of the Fathers of this revolution! And thank you again for being here for us. We are sending our positive thoughts & prayers to you for your IRB approval. You need to get back to your plumbing!! :wink:

All good wishes.

Mum
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Postby SickButHappy » Mon Jun 21, 2010 2:22 am

Good luck!
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Postby drbart » Mon Jun 21, 2010 6:42 am

drsclafani wrote:
i will discuss this more later when i give my zamboni report, but not all ccsvi is picked up via azygous and jugular venography. I was caught by surprise on that one! but you will have to wait for an explanation of some of the negative venograms!


When I read zamboni's paper, I noted that he stated that roberto galleoti, the IR who works in ferrara, enters the left femoral vein and advances up into the azygous and the jugulars. I thought that peculiar because it is such a straighter shot up the right femoral into the jugulars and azygous.

I aske paolo what that was all about and he told me that they were looking for narrowing of the left iliac vein (a congenital narrowing called May thurner syndrome) and then were looking for hypoplasia of the lumbar veins. They also looked for narrowing of the vein of the left kidney. The light went off! That was why they entered from the left side.

Paolo, why didnt you say so in your paper, I asked. Because the editors cut it out for space reasons!

So now i will do all my catheterization from the left femoral approach, even though I dont like to.


Apologies if I've missed some of the discussion after this point.

This is very worrisome - do you know if the Simka/Kostecki folks who are reporting 85% CCSVI are going through the left femoral vein or not?

I suppose it's more than the 15% SOL rate (of which half seem to get sent home with a Lyme disease disgnosis). I haven't see much reporting of what fraction of people see improvements post-op, but I wonder also about discrepancies between DrZ, DrD, you, and others on this count.
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Right Femoral

Postby fiddler » Mon Jun 21, 2010 6:47 am

In my case, at least, and probably all others, Dr. Simka's team goes through the right femoral... so could the 5-10% negatives they find actually be lower? Interesting.
...Ted
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Postby JoyIsMyStrength » Mon Jun 21, 2010 7:04 am

Ted, I asked for Dr. Sclafani's permission first (and of course he was great about it) and sent the comments that you quoted to Dr. Simka in advance of my procedure this Saturday (June 26th). We'll see if he responds.

It's a great question.

Pam
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Postby ndwannabe » Mon Jun 21, 2010 2:17 pm

drbart wrote:.

This is very worrisome - do you know if the Simka/Kostecki folks who are reporting 85% CCSVI are going through the left femoral vein or not?



Dr. Kostecki - from the right. I am one of the "CCSVI not found" cases.
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Postby ndwannabe » Mon Jun 21, 2010 2:44 pm

Dr. Siskin (Albany, NY) just replied to my e-mail regarding this. He enters on the left.
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Postby girl69 » Mon Jun 21, 2010 3:49 pm

I am a case of absolutely no improvements following the liberation procedure 3 months ago, where they did find stenosis in both IJV though...(got a stent on the right). I have asked Dr. S. about it a while ago on this thread, wondering if something could have been missed and with the latest precious info from our great doctor (things he learned in Ferrara #1 lumbar veins), I am thinking this could be related...Dr. Kostecki entered through the right femoral vein ! Does anyone know what exactly is different when you do a venography accessing through the left femoral vein compared to the right ? I tried to tell Dr. K. about it but he replied there wasn't any difference...
Thanks for your help !
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Answer

Postby fiddler » Mon Jun 21, 2010 3:55 pm

Girl69, the answer is above:
they were looking for narrowing of the left iliac vein (a congenital narrowing called May thurner syndrome) and then were looking for hypoplasia of the lumbar veins. They also looked for narrowing of the vein of the left kidney. The light went off! That was why they entered from the left side.

...Ted
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
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Re: Dr. Sclafani -Wishing you the best on Monday

Postby soapdiva884 » Mon Jun 21, 2010 7:55 pm

drsclafani wrote:
annhow wrote:Dr. S.

Wishing you the best as you meet with the IRB. May you have tremendous favor with the board and satisfactorily answer any and all reservations they could possibly have about CCSVI and granting your IRB status!

I know everybody here will be thinking of you.

AH


I needed a bit of a break, so sorry for not being very available this week.

the stress of sitting on the sideline is getting to me

i am a do-er

let's hope for the best news monday

then i can answer some questions for you


Fingers, toes, legs, arms and eyes crossed that the IRB approves you and you can get back to DOING!
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Postby girlgeek33 » Mon Jun 21, 2010 8:31 pm

I feel like I'm waiting for news of someone delivering a baby, very anxious!!!! :)
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Postby girl69 » Tue Jun 22, 2010 3:10 am

Thanks Ted for pointing that out... I guess I had a "blonde" moment or something :wink:
At the risk of having missed the explanation elsewhere, how important is it to use IVUS (intravenous ultrasonography) to detect abnormalities ? Dr. Simka mentionned it as a possibility in a letter to a patient http://www.thisisms.com/ftopic-12031-0.html but from what I know, they don't use it yet in Poland.
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Postby Algis » Tue Jun 22, 2010 4:28 am

@girl69: if I understand well; it gives much better resolution of valves and other endothelial (vein walls) than any other scan method.

But more informed people will probably show up and make it clear :)
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